Autoimmune Disease

The Sunflower Bed

Remember when I was very young, my parents had gone on vacation, so I was staying with you guys?

I awoke in the middle of the night with a horrible stomach bug.

No second thoughts, you pulled me into your bed, put a large cooking pot next to me, and you held me until we both fell asleep in your sunflower bed.

I’ll never forget.

You made me feel loved. I was sick, and you were holding me close to you. Your last thought at that moment was of catching my stomach bug – your first thought was to comfort me.

And it was ok.

This song reminds me of that night mixed with right this second:

“Leaving it all unsaid

Keeping it quiet instead

You know that I won’t explain

Cause I’ve grown to need this pain

You tell me it’s good for now

I’ll heal but I don’t know how

Safe in the way we touch

But it hurts to feel this much

And they say that it goes so I hope that it shows

You are all that I’ve known for a while

And I’m coming up slow and I’m thinking of home

But you’re all that I’ve known for a while

Spending our nights awake

Silent for both our sake

Hold me until I’m strong

Cause I’ll miss this when you’re gone

And they say that it goes so I hope that it shows

You are all that I’ve known for a while

And I’m coming up slow and I’m thinking of home

But you’re all that I’ve known for a while

I’d tell you but I can’t

Please don’t make this hard

Time is all I want

So speak the words I won’t

And they say that it goes so I hope that it shows

You are all that I’ve known for a while

And I’m coming up slow and I’m thinking of home

But you’re all that I’ve known for a while”

-“For A While” by Fenne Lily

Fast forward about 20 years…

Kneeling at your bedside, rubbing your arm, you slowly tell me:

“You will be a good daughter..” …

You’ve stopped me from rubbing your arm, and now you’re rubbing mine. Tears in your eyes, I can tell you’re forcing a smile, but I’m not.

“…a good sister… a good wife… a good daughter in law… a good granddaughter…hm?”

Ok… respond.

Me?…

I nod. It’s all I can get to come out of me.

Friday, July 13, 2018, the fear that I’ve attempted to prepare for comes. This was the last time that I saw you smile, heard your voice, your laugh.

You asked me if I would keep the promise I made you.

You laughed, a hearty laugh, because you realized that you’d forgotten what the promise was.

But i promised you again.

I will get better. Neither one of us know how, but I promised..

I will.

I’m not keeping your promise right now. The stress of the world that I took upon my shoulders has collapsed down on me…

Hey Fibro. Hey Sjögren’s. Nice to see you again. (🙄🙈)

I’m so glad that i got multiple hugs from you on that day.

The next day you would move to a hospice facility, and when they got your pain under control – finally – you began your journey home. You couldn’t speak, but I sat with you, for hours – talking with no responses. Keeping the subjects light and happy, you would raise your eye brows for me and for your daughter.. you would twitch your fingers that I wrapped around my hand, myself.

Two nights before, you felt excruciating pain.. as DD held you… I was told that you said all you wanted was to talk to me.

DD and I planned that Sunday would be perfect for me to sit in bed with you and talk. Even though you may have not been able to respond with words, we still spoke on Sunday. I sat beside you, the same side I always sat on, rubbing your same arm and holding your same hand…(Saturday also..)

I was trying to make everything as “normal” as possible for you to feel comfortable,

And i guess you did. After we spoke and I sat around my family for about 6 hours, at 10:30pm…that night, with your daughter’s back turned away from you, you took your last breath.

Your love was unlike any other love. I’ve heard numerous people say that you were like their mother.

You were my second mom. I feel lucky to have known you since the first day that I took my first breath… until the day of you took your last.

You made everyone around you feel comfortable, like they belonged. And for me, I felt more so like I was safe beside you than with anyone else for the vast majority of my life.

I hope, and I pray that I can still and forever make you proud. I remember the day I knelt beside you bed, you told me that you were proud of me. I’ll never unhear those words, and I long to uphold them.

If I could give a quarter of the love that you gave to this world, I would be happy. I would feel accomplished. I would know that I’m still making you proud.

 

 

❤️🦋☀️,

Bailey

4 thoughts on “The Sunflower Bed

  1. Hey! You’re welcome. It’s the built in humbling you have that doesn’t let you get caught up in yourself to see your own strength. Its ok when you have friends like me to remind you of the things that make you special 😁 I hope you’re feeling a little better these days from that stomach bug and I hope the stress of life eases up on you as well. It’s always nice to shut the world off around you and forget about all the worry and pain of an average day for even just a few moments. Writing/reading our comments to one another gives life to such moments and I’m thankful of that. Be well, Bailey! 💚✌️😀

    Liked by 1 person

    1. Built in humbling? Wow!

      Trey you’re very deep. You have an old and wise soul, that you also, have the ability to tap into. Not everyone has that ability. And you use it quite well to your advantage! You definitely encourage me in my writing, and I’m thankful for that, because writing helps me in such a therapeutic way. I draw, and I love those coloring books that they make for adults now.. the mandala ones? Oh – looooove them!
      But writing comes more often, because typing, or in my case, texting, does not require so much movement of my wrists – which are actually proving to be the pains more than my fingers.

      It’s difficult in this world to find a moment of peace. That’s what brings such beauty to it though, when it comes to you.

      I’m feeling completely better, Trey, thank you! Just some rib pain. Normal on the daily now as all of this progresses. It’s the time of the year to test again for if my Sjögren’s has brought RA or lupus to light. I’m in the first stages of treatment for lupus, and it isn’t showing much accomplishment. They pain I have is more in my joints. But also in my spleen area underneath my ribs… which can also be brought on by the rib pain. A tangled mess, isn’t it? Haha! I don’t know how Brady deals with me sometimes…. I can’t even deal with me all of the time!😂🦋

      I truly appreciate your reminder of my strength. It becomes a day to day occurrence of “just getting by”, so I never view it that way. But that word, “strength”, is all that I hope to come across as!

      I’m also thankful of our comments back and forth. I’m thankful for the shared artistic views of the world and of life in general. So thank you Trey! You also be well!❤️☀️🦋

      Btw, I’m thinking that I receive your (or anyone’s) notifications late. I was on last night, going through these notifications. This one it says “2days ago”, but I received it this morning! Weird right? I apologize for the waiting period. No wonder you don’t think I’m on every day! Bahaha!

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  2. Oh Bailey, you’re a sweetheart. Over these last few weeks, I’ve had the pleasure of learning more about you and all the conditions you have to deal with daily. You manage to stay strong through it all. I can see all of the things you promised to be shine through all the things you deal with. I say all that to say you just continue being you and you’ll never break your promise. ♥️💚😊

    Liked by 1 person

    1. Tears.. tears!! 😭 I showed my husband this, and he said “aw that’s so nice!!!” And all I can say is I just do not feel worthy! I’ve been very sick from stress. And then caught a stomach bug on top of that…. and I just miss my Mimi. I’ve been tested (spiritually), I know, and I just feel so unworthy of such kind words, Trey. Thank you. I never feel like I’m being strong. It’s more like…. guarding what’s pained and pushing through crowds. Ha! She was always the one to tell me I was strong. I never believed her… but from her it was such a compliment.
      And it’s a huge compliment from you too. So thank you. You really help me keep my head up in my writing. Thank you very much!!!💜💜🙂

      Liked by 1 person

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